Tuesday, April 28, 2009

An Update On The Cataract

We are now 3 months out from Landon's cataract removal and lens implant surgery. We visited the ophthamologist last week for a check up. She was very pleased and very impressed with the progress his eye has made. Shortly before surgery, we all noticed that his right eye, the one that contained the cataract, wasn't always tracking with the other eye. Since the surgery, we have had to patch his left eye to get the right one working again. The doc said that his eyes were now moving together as they should.

According to the doc, she believes the cataract wasn't present from birth for him to have recovered as well and as quickly as he has. She explained that if he had never been able to see from that eye, we would have had to work much longer and harder to restore his vision. She was very excited and relieved at his progress.
Landon still has a cataract in his left eye, however at this point it is not obstructing his vision. The doc said as long as she can see past it, so can he. We'll have to keep an eye on it (no pun intended!) and may need to take action if it becomes problematic later.

Friday, April 24, 2009

My Favorite Time Of Year

Spring has arrived and so has the color in our yard. The trees are filling out and the landscape is transforming. I love walking outside each day and seeing a new blossom or another plant returning from its dormant winter state. I get absolutely no credit for all of the beautiful flowers you see in our yard. The kudos lie on the creativity and hardworking shoulders of my mom and dad. They designed and nurtured this beautiful oasis. I'm just trying to keep up.

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The Army Crawl

Landon has done it!  He has taken his first movements forward!  He does a very exaggerated army crawl, but look at him go!

Thursday, April 23, 2009

Speech/Feeding Therapy

I mentioned in a previous post that Landon has been making great strides in his development lately.  The most impressive and exciting, at least to me, is that he is now feeding himself and eating "normal" foods.  Prior to Easter Sunday, Landon wouldn't really eat anything other than stage 2 baby foods.  We would thicken them with cereal, but if there was any texture, such as chunks, hunks or lumps, he would gag, choke and spit the food right back out.  We offered things such as crackers, cheetos, puffs - anything that Landon could pick up - however he wasn't interested in eating them.  Just playing with them by banging them on the tray or together.  And, he didn't care to drink from anything but a bottle.  

Because my 14 month old was still relying mostly on bottles of formula for nutrition and was having difficulty with any texture beyond a stage 2, I requested that he receive the services of a speech therapist.  A speech therapist, you ask?  For those not well versed in speech and language pathology, a speech therapist, ideally, works on all aspects of speech - to include oral motor development.  

I think one of the most interesting topics that I have learned about since Landon's birth has been oral motor development.  It is absolutely unbelievable all that goes into speech and the mechanics of talking.  You and I take it for granted, but think about those times that you have been to the dentist, your mouth numb.  It wasn't quite so easy to articulate then, was it?  Well that is what Landon has to fight against, as well as other children with Down syndrome. Low muscle tone strikes again.

I attended a seminar on oral motor development last summer.  It was presented over 2 Saturdays, 7 hours each day.  It was probably the most valuable information that I've learned so far.  And it wasn't just the information presented in the seminar.  The most valuable wisdom I gained that day came from parents of older children with Down syndrome.  Though their children were verbal and had the ability to understand others, their ability to be understood by others was impaired.  They couldn't clearly articulate their words.  

Think about your child at 2.  At that age, they are verbal, but many words aren't clear.  Most of the time, you as the parent understand what they are saying, however you find yourself "interpreting" for your child with other folks.  The parents at this seminar found themselves still "interpreting" though their child was 12 or 24.  

There is debate within the medical community, as I have read, to whether folks with Down syndrome have a large tongue.  Some say, it is just the low tone that causes the tongue "thrust", the image of how you may picture a person with Down syndrome, mouth open, tongue hanging out.  The tongue, just like the lips and the jaw, contain muscle that can be conditioned and strengthened.  But, you can't really lift weights to tone up these muscles (however there are exercises that can be done, silly as they may look to do them!). 

One thing I learned at this seminar is that the earlier you begin to condition the muscles, then it is that much less you have to work at it later.  Which brings me back to speech therapy for Landon's feeding issues.  Landon just eating stage 2 foods does not exercise his jaw, tongue or lips.  He needs chunks in his mouth so that his tongue will move side to side, push food forward and backward.  He needs to start drinking from a straw to work on his lips.  He needs to chew food to strengthen his jaw.  All of this eating is the foundation for speech later.  Crazy, huh?  

The Friday before Easter Sunday was Landon's first feeding therapy appointment.  No, I don't think that she worked any special magic that day.  But, I'm not sure what made him pick up the cheese puff I gave him two days later, take a bite, chew on it and swallow without gagging.  In case you were wondering what took place during that session - I brought various foods with me and fed Landon.  The therapist observed, offering suggestions on how to slowly incorporate more texture.  Where I would set a cracker on the table and wait to see what Landon would do with it, she said crumble it up in his food.  We tried that.  As long as it was a pretty fine powder he was fine.  If I tried to sneak in a larger chunk, he would gag and spit the food out.  He would also vehemently shake his head no at me.

So over the next week, with wonderful Mary following these recommendations during the day, Landon became able to tolerate more texture.   By the following Friday, our next session with the therapist, Landon shocked me by eating fork mashed green beans.  Granted, they had to be mixed in with baby food, but he ate them!  And guess what he did last night?!  He ate the fork mashed green beans without mixing them.  He still continues to pick up any kind of food we put down on his tray and try to eat it.  Sometimes, the food works its way out of his mouth, but sometimes he swallows.  And what a triumph for him to swallow and not gag.  Sheer elation best describes how I feel each time I see him eat something I know he couldn't before.

I know Landon will walk.  I know he'll reach his other milestones.  But when I think about his future, and him being able to become a self-supporting, happy and independent adult, his ability to clearly communicate with others will be imperative.  To be understood will help boost his esteem and confidence and open many more doors of opportunity.  And that is why feeding therapy is so important to me, but especially Landon.

Wednesday, April 22, 2009

Cute Little Things The 3 Year Old Says...

McKayla: "Mommy!! Come here!"

Me: "Yes, baby?"

McKayla: (as I walk around the corner) "Look at your son!"


Landon: "dadada DA DA da da da DA"

Me: "say MOMMY!"

McKayla: "say Kayla!"

Me: "say Mommy"

McKayla: "Noooo, he needs to say Kayla first!"


Tuesday, April 21, 2009

Along Came Mary...

Landon, up until 6 weeks ago, was in daycare. Though I believed they cared for him to the best of their ability, I don’t believe they had the time or opportunity to really provide one-on-one time with him and work on developmental activities to the degree that he needs it. And when we brought him home in the evening, the few hours we had at night were not enough, when we could and when we would remember to do activities consistently enough to be effective.

Not long after Landon was hospitalized back in December, I learned about the EDCD (Elderly and Disabled Consumer Directed) Waiver. What it does is provide families of a disabled or elderly family member the ability to provide the care needed for the family member who would otherwise be institutionalized or put into a nursing home.

NO. Landon will NEVER be institutionalized. It breaks my heart to know that families do still make that choice. And that Virginia is one of the few states in the U.S. that still has institutions. Two of them.

My initial intention for the EDCD waiver was to hire a respite care provider to work with Landon maybe 2 or 3 evenings a week and some weekends. I found out later that he qualified for personal care – someone to take care of him in our home while we worked during the day.

You might have felt the ground shaking that day from my jaw dropping.

I had two strong, but horribly conflicting emotions – elation from what this opportunity meant for Landon and sheer terror that someone would be taking care of my child in my home alone, without supervision. I have worked in the criminal justice system for 10 years now. I know what people are capable of. I’ve heard the horror stories. I’ve seen the impact. Dustin and I had to make a decision, and we didn’t have much time in which to do it.

We went through a home health nurse program and Mary, a certified nursing assistant came into our home to take care of Landon. I find my expressive language skills failing me now to adequately explain what a positive experience this has been for Landon.

Landon’s development has shown so much improvement. Mary is present for Landon’s meetings with the infant educator and speech therapist and follows the instructions, activities and exercises given by the infant educator. Finally, someone is able to work with Landon on a consistent basis – and it is showing.

Now that this has been brought to our attention, Mary, Dustin and I make it a priority to point things out to Landon and we have taken more of an active role in showing him who is who and what is what. And Mary is persistently working on teaching “Momma” since Landon babbles “dada” all day long. I love it!

At his 6 month review, we set goals that we hoped Landon would have accomplished by this review. They included: Landon will eat some finger foods without gagging or choking (not met); Landon will finger feed himself a meal or snack each day (not met); Landon will sit independently for 5 minutes and free his hands to play with a toy (met); Landon will rock on his hands and knees while his big sister talks to him for 1-2 minutes each day (not met); Landon will crawl on his hands and knees from the family room to the kitchen to get a family member’s attention several times a day (not met); Landon will play in tall kneeling at a surface such as the sofa with a toy each day for 2-3 minutes (not met); Landon will combine toys during daily play time (not met); Landon will use gestures such as “up” and waiving both spontaneously and on request (not met); Landon will say Momma and Daddy to call his parents each day (not met); Landon will use sign or word approximations for “eat”, “milk”, “more” and “all done” to let his parents and providers know what he wants throughout the day (not met).

As of April 1, Landon had not met any of these goals, except sitting independently for more than 5 minutes. Now, he is eating finger foods without gagging or choking, he will feed himself a meal or snack each day, he is just beginning to scoot forward on his belly by pushing with his legs (his preferred method of transportation right now is log rolling), and he is waving. I believe all of this progress is due to the one-on-one consistent work that Landon gets from having Mary in the home with him. I believe, too, that he will accomplish the above listed goals by the time we review his progress in July.

Like I said, I have no doubt that he will blossom.

IFSP Review

On April 1st, Landon had his annual IFSP review. For those not familiar with the terminology, it stands for Individualized Family Service Plan. Any child that receives services through the Infant and Toddler program (for ages birth to three) will have an IFSP. The purpose is to determine which services are needed for the child and then to evaluate the effectiveness of those services.

So, how did Landon fare? His skill level was evaluated in 7 areas of development: cognitive, expressive communication, receptive communication, gross motor, fine motor, social/emotional and adaptive. Generally, Landon fell into the 8-9 month range, with some noted exceptions. His fine motor skills were in the 10-11 month range and his receptive communication was in the 5-6 month range. It was explained that it is not common for children to have a lower receptive language skill than expressive.

Receptive language is what you understand when someone communicates something to you. If I waive to you, receptively, you know that I’m saying hello. If I shout, “No!” you know that I don’t want you to do something.

Expressive language is, in turn, what I listed in my example as my way of communicating. As we get older, we learn more sophisticated ways of communicating, and receptively, understanding.

In order to be able to express language, you have to understand it. That is why it is unusual to find that Landon’s receptive language skills are lower than his expressive. The infant educator gave us the specific example that Landon is not consistently responding to key words such as "Daddy" or "ball" or following simple directions. One reason, she thought, could be a hearing problem.

I took Landon in for a follow-up hearing test. He hasn’t had one since he was about 4 or 5 months old. The result? Landon can hear. The audiologist did say that the tube in Landon’s left ear was not working for him and she’ll discuss with the ENT on how to address that.

My theory on why Landon’s receptive language is lower than is expressive, is that we haven’t really worked with him on following directions, or really expressed to him who “Daddy” is or what a “ball” is. Actually, we haven’t worked on many developmental activities consistently up to this point, shamed as I am to admit it.

When I look back and think, "why haven't we done these things?" I have to admit that my focus with Landon has been completely different then it was with McKayla. When she was a baby, I followed What to Expect the First Year to a T. I kept up with each month of development and followed suggestions on how to help McKayla accomplish "milestones." I read parenting magazines and scoured babycenter.com for ideas. And many things, we didn't have to work on. McKayla just picked it up, as most children tend to do.

With Landon, I find myself researching and learning about Down syndrome. Instead of my focus being on just reading to your child, when to wean your child from a bottle, to what foods are safe for this age, instead, I'm reading about Transient Myeloproliferative Disorder and leukemia, hypotonia, hypothyroidism, cataracts and eye health, oral motor development. I also have to remind myself that it is going to take more work, determination and time for Landon to reach "milestones". That they don't come as easy for him as they did McKayla.

Actually, I often feel overwhelmed with all that I need to keep "in mind" for him. Remembering to schedule the appointments for the well baby checks, the hematologist, the ophthamologist, the pulmonologist, the ENT, the cardiologist, the infant educator and the speech therapist (I feel like I'm forgetting an ...ologist in this list). And when I schedule, making sure that Dustin or I can take him without missing too much time from work. And trying to remember the information and instructions from each appointment. And following through with the recommendations.

Though I constantly feel tired and overwhelmed, one thing remains true. I love the source of my worry with all my heart has to give. I don't question why I was given this beautiful gift. I also don't feel that I'm different from any other parent that strives to pave a full and rewarding road for their child. We may have to work harder, but it will pay off in the end. For I see us as not just weekend gardeners, but landscapers, laying out a foundation that will eventually blossom into a beautiful garden. And I have no doubts that Landon will blossom.

To be continued…

Sunday, April 19, 2009

Birthday photos...

So I have some catching up to do. I've been meaning to post these pictures for a while, but keep saying, "I'll get to it later". Well....it is now 2 months later! No one has to tell me that time flies...

I combined McKayla and Landon's birthday parties. Much cheaper and easier and I'll take advantage of combining their parties for as long as I can!! 

Here is their birthday cake. I didn't realize when I ordered it that they would give me another little cake entirely for the 1 year old. 
McKayla was encouraging Landon to blow his candle out:
As you can see, Landon enjoyed the feel and texture of his little cake. I don't think any ended up in his mouth. His hair got a good taste, though!
We ended up opening most of the presents later at home. McKayla opted for playing over opening presents. 
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Wednesday, April 8, 2009

Fly Little Angel

Today marks an occasion for two parents that none should have to endure. I’ve never met these parents, at least to my knowledge. I’ve never seen their daughter Evie’s precious face. But I grieve for them. For today, Evie will be removed from the machines that sustain her life.

Evie is 2 years old and she has Down syndrome. She developed leukemia and began chemotherapy treament a couple of months ago. Her family is involved in the local Down syndrome association, as we are. The association sent word when Evie began her treatment, asking all members to pray for Evie’s speedy recovery, as the treatment entailed lengthy stays at the hospital.

Unfortunately, Evie developed pneumonia. Every day, I anxiously awaited news on Evie’s status, hoping that she was getting better, but her health continued to decline. Yesterday, her mother sent the word to the group that there just wasn’t anything else the doctors could do for her.

I can’t begin to imagine the impossibly difficult decision that Evie’s family had to make. My heart aches for them. Please, take a moment today to say a prayer for Evie’s family and the painful journey they have ahead of them.

I’ve never met little Evie, but she has made an impact on me and so many others. The show of love, compassion and support for Evie’s family from our group has been breathtaking. It is amazing the unity and allegiance that one extra chromosome has created. We are all beside ourselves, though, wishing we had the magical answer that would miraculously make Evie better, or ease the pain of her parents. Today, I have nothing to offer, other than spreading the word and asking everyone to celebrate the life of this sweet little girl.

Farewell Evie, fly little angel.

The Gift of Memory
(author unknown)

One gift, above all others
God gives to us to treasure
One that knows no time, no place
And one gold cannot measure

The precious, poignant tender gift
Of Memory...that will keep
Our dear ones ever in our hearts
Although God gives them sleep

It brings back long remembered things
A song, a word, a smile
And the world's a better place...because
We had them for awhile

Wednesday, April 1, 2009

My Mind, Finally Put Into Words

I am not a creative writer by any means.  In fact, I'm jealous of my blogger friends that are able to tell their stories that make you feel the emotion of the moment, or portray their thoughts in a completely comprehensible way.  I found someone who often speaks her mind, and mine as well, little does she know.  Here, she answers the Million $ Question.